A plain-language guide

systemic sclerosis

What is known, what is still uncertain, and what is actively debated, written plainly, and built only from published medical research.

Early map · 7 sourced statements Every statement names its source Updated 2026-06-12
Please read this first. This guide is a companion to your medical team, not a replacement, and it is not medical advice. Everything here is tied to published research. If something you expected is not here, it almost always means we have not mapped a source for it yet, not that it is unknown to medicine. systemic sclerosis is an early, growing map, so it will look incomplete on purpose: we would rather show less and have every line be something you can check than fill the page with claims we cannot stand behind. For anything about your own situation, your clinicians hold the full picture. How this guide is built and why.

What it is

Systemic sclerosis (scleroderma) is a rare autoimmune disease in which the immune system, blood vessels, and connective tissue are affected, leading to progressive scarring (fibrosis) of the skin and internal organs.

Signs and symptoms

Pulmonary arterial hypertension

High blood pressure in the lung arteries (pulmonary arterial hypertension) is a serious complication and a major cause of harm in systemic sclerosis.

Limited evidenceSource: ORPHA:90291
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:42018656
Notesplain_language confirmed from PMID:42018656 via curation 2026-06-12.
Last reviewed2026-06-12

Raynaud phenomenon

Raynaud's phenomenon, where fingers change colour and go numb in the cold, is an early and near-universal feature, reflecting the blood-vessel involvement of the disease.

Limited evidenceSource: ORPHA:90291
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:42018656
Notesplain_language confirmed from PMID:42018656 via curation 2026-06-12.
Last reviewed2026-06-12

Digital ulcer

Painful sores at the fingertips (digital ulcers) can develop because of the reduced blood flow caused by the disease's blood-vessel damage.

Limited evidenceSource: ORPHA:90291
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:42018656
Notesplain_language confirmed from PMID:42018656 via curation 2026-06-12.
Last reviewed2026-06-12

Sclerodactyly

Tightening and hardening of the skin of the fingers (sclerodactyly) is a hallmark skin change, often following early puffy swelling of the fingers.

Limited evidenceSource: ORPHA:90291
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:41991397
Notesplain_language confirmed from PMID:41991397 via curation 2026-06-12.
Last reviewed2026-06-12

Treatment and management

What the research describes, not a recommendation. Treatment decisions belong with your clinician.

This covers treatments that appear in the published research mapped here. Investigational and experimental therapies are not included, so their absence is a boundary of this map, not a sign they do not exist.

Mycophenolate mofetil

Mycophenolate mofetil is an immune-suppressing medicine used as a backbone treatment for the lung scarring (interstitial lung disease) that can occur in systemic sclerosis.

Used to help with: Systemic sclerosis.

Limited evidenceSource: PMID:42214802
The source text this rests on
“Current evidence suggests that combined immunosuppressive therapy with mycophenolate mofetil (MMF)-or less frequently cyclophosphamide (CYC)- plus a biologic agent-such as rituximab (RTX) or tocilizumab (TCZ)-is a rational and effective strategy in inflammatory, progressive systemic sclerosis (SSc)-associated interstitial lung disease (ILD), particularly when ILD coexists with other SSc domains encompassing skin involvement, arthritis, and myositis.”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:42214802 via curation 2026-06-12
Last reviewed2026-06-12

Turn this into questions for your doctor

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How to read the evidence labels

Widely acceptedSpecialists broadly agree on this.
Strong evidenceBacked by solid, repeated research.
Moderate evidenceReasonable evidence, still being confirmed.
Limited evidenceSome evidence, but not yet convincing.
Early evidenceAn early finding that needs more study.
Experts disagreeResearchers actively disagree about this.

Where this comes from

This guide is built from 2 published source(s). Every claim above links back to one of them. Click any source ID to read the original on PubMed.

ORPHA:90291 · Orphanet/HPO annotations for Systemic sclerosis
PMID:42214802 · Combined immunosuppressive therapy in systemic sclerosis-associated interstitial lung disease: Phenotypes matter.